Medical Treatment of Seriously Disabled Newborns - Research Paper Example

Decisions about medical treatment of seriously disabled newborns raise questions about personhood, the sanctity of life, quality of life and the appropriateness of parents as decision-makers. None of these questions have clear and obvious answers.’ Discuss Many of the issues surrounding the treatment of seriously disabled newborn children seem to have become heightened in the last few years. Much of this is due, in part, to the significant advances in medical science, such that babies born with severe abnormalities that would ordinarily have died not long after birth, are able to be given life saving treatment. As a result of these advances the issue of when and when not to offer life saving treatment has come to the fore. In many cases there seems to be a kind of lottery system in determining which child might be offered treatment and which declined. However, decisions do invariably have to be made, and this paper proposes to look at a variety of cases where such decisions have been made to try to determine whether the decision making process challenges the sanctity of life. Within this paper consideration will be given of the decision making process, in order to determine what the deciding factors were in the refusal of treatment, and who was ultimately responsible for making the decision to refuse treatment. This paper will also consider the lack of autonomy of neonates in determining their fate, and will question whether the decision to withhold treatment should be with the parents of the neonate or the medical professionals. This paper will also consider the decision making process with regard to the quality of life argument often expounded by medical professionals, to justify the withdrawal of medical treatment. Within this framework, the paper will consider whether there can be any certainty with regards to the quality of life that will be experienced by the newborn, given the continuing advancements in medical science. In order to put things in perspective it is important to consider cases where the decision to withhold treatment has been made, as well as where medical treatment has been continued. This will necessarily involve examining the prognosis of the newborn and addressing quality of life issues. In Re J (A minor) (Wardship: Medical treatment)1 the court was asked to decide whether it was lawful to allow a severely physically and mentally handicapped baby to die. The baby had been born prematurely and had suffered brain damage due to a lack of oxygen. The baby suffered epileptic seizures and it was considered likely that the baby would suffer spastic quadriplegia. The baby was also deaf and blind but was able to feel pain and would continue to be able to feel pain throughout its life. The child was made a ward of court, and the parents had expressed their wishes for the child not to be re-ventilated should this be required to assist its survival. At the Court of Appeal Balcombe LJ agreed with this stance stating that ‘to preserve life at all costs, whatever the quality of life to be preserved…may not be in the interests of the ward’. Taylor LJ affirmed this opinion, observing that the correct approach should be to ‘judge the quality of the life the child would have to endure if given the treatment and decide whether in all the circumstances such a life would be so afflicted as to be intolerable for the child.’ Balcombe LJ went on to state that the decision of the parents in this case was that of a reasonable and a responsible parent. Both Balcombe LJ and Taylor LJ made the point that the withdrawal or withholding of treatment should only occur in exceptional circumstances where there is a clear indication that this would be in the best interests of the child. They were quick to point out that they could not endorse any form of treatment that might accelerate the death of the child, but would be prepared to order the withdrawal of treatment to sustain life, allowing the child to die from the underlying cause. Lord Donaldson MR made the point that the court must decide ‘whether in the best interests of the child, a particular decision as to medical treatment should be taken which as a side effect will render the death more or less likely’. In effect, it could be argued that as the withdrawal of the treatment will lead to the death of the child, those responsible for the withdrawal could be guilty of murder. However, a distinction can be drawn between the deliberate act of killing someone and the withdrawal of treatment on the basis that the individual is certain to die if treatment is withdrawn and may still die if treatment is continued. This is based on the notion that such a withdrawal of treatment is to be regarded as humane if the individual is likely to find life intolerable. In an earlier case of Re B (A minor) (wardship: treatment)2 the baby was born with Down’s syndrome as well as having a blockage in her intestines. Without an operation the blockage would be fatal. Given the baby’s medical condition, the parents refused to give consent for the operation, believing that it was in the child’s best interests to let her die. The local authority disagreed with their decision and the baby was made a ward of court. Initially the court ruled that the parents’ decision should be respected, however the local authority appealed. Based on the fact that if the operation was successful the baby might be able to live to the age of 20-30 the court ordered that the operation should go ahead. This was despite the fact that if the operation was unsuccessful the baby would experience a high degree of pain and discomfort and might only live for a maximum of 2 – 3 months. In reaching his decision Templeman LJ stated ‘…the duty of the court is to decide whether it is in the interests of the child that the operation take place. The evidence in this case only goes to show that if the operation takes place and is successful then the child may live the normal span of a mongoloid child with the handicaps and defects of the life of a mongol child, and it is not for this court to say that life of that description ought to be extinguished.’ Dunn LJ affirmed this decision making the observation that ‘…there is no evidence that this child’s short life is likely to be an intolerable one.’ In this case, the operation was a success and the child was able to live the normal life of a child with the disabilities associated with her condition. The two cases, above, demonstrate how quality of life can be a determining factor in the withdrawal of treatment. There are, however, other factors that can influence a decision not to treat a severely disabled neonate. These other factors include the prospect of success, the usefulness of the treatment, the resources available and the parents’ views on the treatment. Although quality of life is of importance, it is difficult to quantify the quality of life of a given individual. As is evidenced in Re B above, the child’s quality of life would be impaired by Down’s syndrome, but not to a more severe degree than any other child with the same condition. Kennedy and Grubb (1989) noted that Professor Dunstan’s approach to the treatment of severely disabled neonates was that treatment should be continued where there was ‘a reasonable hope of benefit, without excessive expense, pain or other serious inconvenience.’ Prior to the 1960’s children diagnosed with spina bifida would be frequently denied treatment and would subsequently die as a result of the condition. In 1971 Lorber noted that with treatment some of these children might be able to live normal lives. From this the ‘Lorber selection criteria’ was developed where each baby was assessed as to the level of paraplegia, enlargement of the head, severe kyphosis or scoliosis or associated congenital abnormalities. Those with any of the above were offered no active treatment, on the basis that according to Lorber they would ‘die quickly’. Advances in medical science have enabled treatment of those who fall within the ‘criteria’, however according to Gross, Cox, Tatyrek, Pollay and Barnes (1983) early selection of those suitable for medical intervention was still encouraged in 1977. Sutton (1985) also noted that early selection was still evident, and treatment was determined on the basis of the likelihood of the child being able to have a normal existence after the treatment. Klotzko (1997) noted how, in the Netherlands babies born with spina bifida might be given a lethal injection, as was the case for a baby girl born in the Netherlands in 1993. The doctor administering the injection, Prins, justified his action on the basis that the baby would need to undergo continual operations in order to sustain her life in the future. Prins was of the opinion that her quality of life would be severely impaired by this ongoing treatment and that termination was therefore in her best interests. In 2006 Sarah Templeton highlighted the fact that the Royal College of Obstetricians and Gynaecology were considering euthanasia of severely disabled newborns. The college was of the opinion that ‘active euthanasia’ should be available in order to spare parents from the burden of having to raise a handicapped child. According to Templeton a spokesman for the college had said that “A very disabled child can mean a disabled family. If life-shortening and deliberate interventions to kill infants were available, they might have an impact on obstetric decision-making, even preventing some late abortions, as some parents would be more confident about continuing a pregnancy and taking a risk on outcome.” The newspaper article goes on to say that many were in support of this proposal including the mother of a severely disabled child. As a result of this proposal an inquiry was carried out by the Nuffield Council on Bioethics. Amazingly, the Bishop of Southwark, Tom Butler, was also in agreement with the proposal according to Neil Sears, a reporter for the Mail. In the article written by Sears (2006) the Bishop is reported as saying that the high financial cost of keeping severely disabled babies alive should be a factor in life or death decisions. In 2007 the report issued by the Nuffield Council on Bioethics laid down guidelines as to when treatment ought to be given to neonates born with severe disabilities. They concluded that where the baby is born any time after the 25 weeks stage of pregnancy intensive care should be given to the child unless there is any severe abnormality which is likely to have a significant impact on the likelihood of survival of the baby. Babies born between 24 weeks and 25 weeks should also be given intensive treatment unless the parents and clinicians are agreed that it is not in the baby’s best interests to do so. The report went on to say that any baby born before 23 weeks should not be resuscitated unless the parents specifically request this. In relation to the withdrawing of treatment the report suggests that such withdrawal will be justified if the treatment given is proving to be futile or if the child is likely to have a very high risk of severe disability as they mature. Although raising a disabled child might be problematic it does not seem right that the life of the child can be terminated merely because their quality of life might be impaired by their disability. In 2000 the courts were forced to make a decision in relation to the separation of conjoined twins3. It was accepted by the court that the operation would inevitably lead to the death of at least one of the twins, and there was no guarantee that the other twin would survive the procedure. The decision was made on the basis that it was in the best interests of both of the twins for the operation to be performed, despite the fact that only one of the twins would be able to survive. Regardless of the objections of the parents, the court ordered the operation to be carried out which resulted in the death of one twin ‘Mary’ and the survival of the other ‘Jodie.’ One of the deciding features of this case was that both twins would have died if the separation had not been carried out, and it was apparent that ‘Mary’ was already struggling to survive as she did not have a heart and lung of her own to sustain her life. This case demonstrates how the wishes of the parents can be ignored. The court accepted that the parents would rather both die then save just the one, and that on religious grounds they could not agree to the killing of one in order to save the other. For this reason, the court was asked to intervene so as to protect the life of ‘Jodie’. Although it could be argued that the decision to terminate the life of a disabled baby interferes with the sanctity of life, some of the decisions above seem to suggest that in some cases the decision to terminate can be justified. However, the quality of life argument does cast some doubt on the validity of such decisions, as it is not always possible to determine when the quality of someone’s life is so impaired that they would be better off dead. Skol (2006) notes how opponents of the withdrawal of treatment would argue that we cannot ‘know with any certainty that even a severely disabled child will not lead a worthwhile life.’ Skol argues that if we cannot define quality of life then every baby should be given the opportunity to develop to its fullest potential. Allowing decisions to be made in this way could invoke the ‘slippery slope’ argument that would basically allow parents or medical practitioners to select only those infants that are born without any abnormalities. In order for the courts to be able to decide on when the life of a baby should be terminated, there needs to be stringent guidelines dictating when it is no longer viable to continue with treatment. There can never be any justification for the deliberate termination of the life of a baby, as was the case with the baby born in the Netherlands in 1993. It should only ever be acceptable to withdraw treatment that could lead to the death of the baby, as without such intervention the baby would have died naturally anyway. The conclusion that can be drawn from the above, is that in many respects the sanctity of life is diluted down, so that those making the decision to terminate the life of a severely disabled baby can justify their actions. It could, however, be argued that the blame for this stems from advancements in medical treatment, since years ago many such babies born with severe disabilities would have died naturally. The ability of the medical profession to be able to sustain the life of such children has made it necessary for the courts to have to intervene, where previously nature would have taken its course. Kennedy, I & Grubb, A (1989), Medical Law: Texts and Materials, Butterworths, London Whitelaw, A, (1986) Death as an option in neonatal intensive care, Lancet Chao, T C, (1990), Medical-legal and ethical issues in neonatalogy, Singapore Medical Journal 31: 71-74 Gross, R H, Cox , A, Tatyrek, R, Pollay, M & Barnes, W A, (1983) Early management and decision making for the treatment of myelomenigocele, Pediatric, 72:450- 458 Sutton, L N, (1985) Myelomenigocele – the question of selection, Clinical Neurosurgery, 33: 371- 381 Klotzko, A J, (1997), What kind of life? What kind of death? An Interview with Dr Henk Prins, Bioethics, 11: 24-42 Templeton, S K, Doctors: Let us kill disabled babies, The Sunday Times November 5 2006 Lorber, J, (1971), Results of treatment of myelomeningocele: an analysis of treatment of 524 unselected cases with special reference to possible selection for treatment, Development Sears, N, Outrage as church backs calls for severely disabled babies to be killed at birth, The Mail, 12 November 2006 available at http://www.dailymail.co.uk/news/article-416003/Outrage-Church-backs-calls-severely-disabled-babies-killed-birth.html#ixzz0cFKhNzNu Levy, S, The Lesser of two evils: A contextual view of the case of the conjoined twins, available at http://www.uel.ac.uk/law/research/publications/conjoinedtwins.htm Sokol, D K, Life and death in the neonatal clinic, The Sunday Sentinel, 19 November 2006, available at http://www.medicalethicist.net/documents/LifeandDeathintheNeonatalClinicPDF.pdf Nuffield Council on Bioethics, (2007), Critical care decisions in fetal and neonatal medicine: ethical issues, available at http://www.nuffieldbioethics.org/fileLibrary/pdf/CCD_Short_Version_FINAL.pdf Brock, D, (1989), Deciding For Others. Cambridge: Cambridge University Press Brody, B, (1988), Life And Death Decision Making. New York: Oxford University Press Chapman, C (1984), Physicians, Law,& Ethics. New York: New York University Press Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL, (2000), Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers.  Vol 132, Annals of Internal Medicine. 451-9. Maguire, D. (1984), Death By Choice, Garden City: Doubleday & Company Van Der Maas PJ, Van Delden JJ, Pijnenborg L, Looman CW, (1991), Euthanasia and other medical decisions concerning the end of life. Vol 338, Lancet   669-74 Read More